Normal Blood Test, Awaiting Endoscopy

[lkirschner]

My celiac blood tests came back "normal" today and I am beyond frustrated!!!!!!!!!!!! After years of health problems, I was finally beginning to feel some hope that they may have found something that's causing my diarrhea, major fatigue, gas, bloating, headaches, tingling in hands, muscle issues and a bunch of other issues. I know it might sound strange that I'm upset about normal results, but I'm so tired of this and I just want to get better.

When I met with the gastro at the beginning of last week, he indicated that he wanted to do the celiac blood tests as well as an endoscopy/biopsy for both celiac and eosinophilic esophagitis (EoE--inflammation of the esophagus due to food allergies). When I was at his office that first day for the initial exam, they scheduled the endoscopy/biopsy for Oct 15th (a month from now) without even waiting for the blood work.

I'm totally confused now...I know that there are sometimes false negatives with the celiac blood work, but I guess I'm feeling kind of hopeless and assuming that the biopsy will also come back negative because I've taken so many tests and they can never find anything. Plus, my hubby and other family members aren't really all that sympathetic anymore, because the drs can never find anything. Has anyone out there experienced a false negative on the celiac blood work and then a positive biopsy a few weeks later???

I do not know if the gastro ordered them both because he felt fairly confident that it was celiac or if that's just their standard procedure. I know that he also needs to check the esophagus via biopsy for the EoE, though (so they were planning to kill two birds with one stone during that endoscopy and check for both celiac and EoE).

Also would be interested in hearing from anyone who has children with celiac, particularly if you were diagnosed before them or at around the same time. Both of our kids (especially our son) have some of the symptoms of celiac, as well as two of my three siblings and my mom. If my celiac blood test came back positive, I had planned to call our pediatrician and have our son tested right away. Now that my blood work is negative (well..."normal"), I'm debating about whether to call her anyway, since he is only 6th percentile for weight, doesn't eat much and has had a ton of health issues that have had her puzzled for the last seven years. I'm just wondering if we would be able to get him diagnosed more quickly than me, and if a diagnosis for him would also help speed up my own diagnosis. Since he is already allergic to peanuts (life-threatening allergy) and milk, soy and egg, I'm definitely not going to rejoice if he gets diagnosed with celiac and needs to avoid gluten...but there is something going on with both of us and I am so desperate for answers!

I don't want to wait a whole month for my biopsy and am feeling very alone right now because other family members don't really get it. I would appreciate any advice or suggestions that you all might have. Thanks.

[Celiac Mindwarp]

I am in a similar situation, and it is tough. My blood result was negative, though I have been wheat free years, so I wasn't surprised.

Are you still eating gluten? Do stay on it if you can until the biopsy.

I couldn't, so expect that to be negative too.

However - with my massive reaction to gluten when I tried I have decided to go gluten free. I think like you I had a lightbulb moment when I saw the list of celiac symptoms, and I am not letting go, given how many people seem to test negative but respond to diet.

My son also has anaphylactic nut allergy, as well as asthma, eczema, milk and egg issues. He had dreadful colic as a baby and reacted to formula.

I will insist on him being tested, no question.

Sorry your family dont get it. Hang out here a while, these guys and girls are keeping me sane.

Good luck x

[lkirschner]

I am in a similar situation, and it is tough....

Thank you! It does help to hear from others in a similar situation.

Yes, I'm still eating gluten and am trying to hold out until the endo in October. I think I'm going to call the nurse back at my gastro's office and just ask her a few questions, like how accurate they feel the blood tests are. I've seen some figures online, but I'd be interested to hear what this particular doctor/nurse says about accuracy. I also want to ask her exactly which tests they did (I didn't write it down) and ask for copies of the results. Then I'll just tell her to let me know if they get any cancellations before the 15th. I'll probably also talk about it with our pediatrician this week, just to see what she thinks given her familiarity with my son's medical history.

Thanks again. It really does help to hear from other people who know what I'm going through.

Lisa

[Celiac Mindwarp]

All sounds sensible to me. I had to go back for my results too, didn't occur to me to get them at the time.

My doctor said she needs to ask a specialist about testing my kids. I know the advice here (UK)is to test all 1st degree relatives (parents siblings kids).

That only works if I get a positive. I think my Mum may have it too, but can't persuade her to get tested. (Can't decided whether to guilt trip her, as if she got a positive test it could help me...)

Wont stop me though!

All the best for the next few weeks x